Over the last couple of weeks, I have shared two posts pertaining to cancer survivorship. One dealt with the acceptance of a shortened mortality. The other dealt with the realization that to survive cancer, and live after cancer, the survivor must learn to advocate for themselves. Well, here comes the third and final post in this series. And I want to stress, though the post clearly focuses on Hodgkin’s Lymphoma, as more and more cancers find cures, which will also mean new and different long term survivors, the strategies necessary to navigate the next several decades, are the same. So please, read on.
Several years ago, in 2016, an organization was created, to help Hodgkin’s patients survive, and live after cancer. Unlike the major cancer organizations, Hodgkin’s International focuses primarily on the Hodgkin’s Lymphoma community. However, like I said, in much of the information and guidance provided, it can be beneficial to other cancers as well. But for being one of the most successfully treated cancers, it hardly gets any attention or focus, and those who survive it, get even less. Which is where Hodgkin’s International comes in.
This meme is so powerful. Yes, it is from Michael J. Fox, who is courageously fighting Parkinson’s Disease, but the quote actually applies in many circumstances. When it comes to Hodgkin’s International, the organization is led 100% by the very experts who have survived Hodgkin’s Lymphoma. The seven board members and lone staff member, are all long term survivors of Hodgkin’s Lymphoma, like me, and like me, deal with various late developing side effects. Like me, at one time or another, there was struggle trying to find care and answers for unexplained health issues that were coming up. Like me, many face emotional struggles as the physical issues pile on. Who better to provide information and support, than those who have “BTDT” (been there, done that)?
Look, as I have said many times before, no one gets it more than someone who has dealt with cancer before, when you are told you are in remission, and you are declared in remission, and you complete enough follow-ups, you want to take off faster than the “roadrunner” racing off from Wile E. Coyote. While I understand this position, it does leave me concerned. I know, all anyone wants to do is get back to the life that they led before cancer. And you can for the most part, most likely. But there are things you have to realize, and though not guaranteed, the possibilities do exist, there could be things later in life that develop health-wise because of the treatments that gave you that “cure.”
So, regardless if you are a survivor who has had enough when you are given the “ok” sign, or someone who is already dealing with health issues, the point is, to be aware of, and remember, Hodgkin’s International. And for the record, why international? Because there are survivors of Hodgkin’s all over the world, and many of us are connected via social media peer groups. Many without the information that I want to share with you today.
So, without further adieu…
hodgkinsinternational.com
On this website, you will find a variety of resources. It should be noted, it is constantly being updated. The great thing about my fellow survivors, is we share information, whether it be diagnostics, late side effect information, which specialist to see, or how to find a survivorship clinic, because this part of survivorship is relatively unknown, it is taking those who know, those who have the personal experience, to build this website.
One of the unique things offered on the Hodgkin’s International website, are video presentations by patients, survivors, and medical professionals. There are personal testimonials of survivorship. There are explanations of the various health issues that are experienced, and many times, recommendations of what to do about them. Recently, in what was a “two for” presentation, we (survivors) got to hear from an oncologist who also happened to be a long term survivor of Hodgkin’s Lymphoma. Again, I want to stress, you can learn how to deal with other cancer treatments similarly by learning about the treatments used, and the need to understand how they can affect the body later on in life.
Then of course, there is the information that can be found on the website, from the various late effects possible, both physical and emotional, research articles, and other literature. The website continues to add the locations of known “survivorship clinics,” facilities that at least recognize late developing side effects from treatments. At the very least, you can find a “survivorship plan”, which includes research articles, and other helpful information for you to take to your primary care doctor, if that is your only option available. This is all verified and confirmed research information, by those who have studied late side effects as well as Hodgkin’s Lymphoma.
And Hodgkin’s International makes this all easy and convenient for you. You do not even have to just “bookmark” or save the website location. By signing up for the monthly email, you receive announcements about upcoming video conferences discussing topics like mentioned above. You will also be able to read stories from other survivors.
Again, like I said, if you are a patient of Hodgkin’s Lymphoma, any cancer really, and you are like I was, wanting just to move on, just remember, that if a time does come, and you find yourself, dealing with unexplained health issues, Hodgkin’s International is the place you want to begin looking for answers and support. I say this without reservation, there is no other organization out there, even the big ones, with the commitment to long term cancer survivorship as Hodgkin’s International. And why is that? “People living with the conditions are the experts.” Thank you Michael for pointing that out.
My last post, dealt with how long term survivors of cancer, in particular, Hodgkin’s Lymphoma, look at their survival longevity, or rather, the shortening of their mortality, due to the late developing side effects from the treatments that gave them remission. Though I would not normally like to do two “heavy” posts pertaining to survival in a row, I need to publish this post, while my memory is hot.
I was attending a Zoom conference yesterday, as I often do. The guest speaker was an oncologist who was going to speak about long term side effects. I must admit, I did not pay attention to the details of the speaker prior to the Zoom, just the topic. In just moments, I learned that I had a lot in common with the good doctor, most notable, he was a long term survivor of Hodgkin’s Lymphoma himself. Compared with other Zoom conferences I have attended, this was the first time in a long time that I can recall anyway, hearing of an oncologist speaking from personal experience. If I am being honest, I really do not know any doctors personally who have had to deal with cancer, or at least admit it. I was anxious to hear what he was going to say.
The doctor continued his introduction. Turned out, we had other factors in common with each other, especially when it came to Hodgkin’s Lymphoma. He was treated back in 1989, the same as me. He was a few years younger than I was, which would still make him a few years younger than me now (though you would not be able to tell that from looking at both of us). We were both survivors of over 33 years. Our treatments were similar in that we both had radiation treatments, but his chemotherapy regimen was partially different than mine, he getting only half of the chemo drugs that I got. There were other facts of similarity, but you get the idea. We had a lot in common.
About half-way through, the doctor finally got into long term survival issues. Again, he spoke of things that I was already aware of from particular body systems and the risks faced for complications and secondary issues. And then he dropped this bomb on all of us attending:
“You need to advocate for your own care.”
If you have followed “Paul’s Heart,” even just recently, you know my efforts to bring attention to the need for survivorship care for those of us treated twenty, thirty, forty, even fifty years ago. Some of us have been lucky enough to find doctors who have learned how to care for our particular issues, others sadly have not. But as each day passes, all of us hope that we get one step closer to a universal recognition of, and protocol for, dealing with late side effects caused by treatments, radiation and/or chemotherapy, for Hodgkin’s Lymphoma. And as one who has access to the specialized care necessary, I want to believe, that there will come a time, that oncologists all over, will finally be honest and open with their cancer patients, and tell them the truth, “yes, we can get you into remission, but you are going to need to be followed up for the rest of your life, not just to make sure that your cancer stays in remission, but should you develop any late side effect, it can be dealt with sooner than later.” Sure, not everyone develops these issues, but enough do so to warrant the protocol for lifetime follow-ups. There are enough of us long term survivors to prove this need.
As if stuck in a time loop, I “heard” in my head, the doctor repeat and repeat, “you need to advocate for your own care.”
Nope, even though it was just a phrase now stuck in my head, no matter how many times it played, it never got better hearing it.
Now, there are some in our survivor/patient peer social media groups who have been on the receiving end of me urging them to “advocate” for themselves in pushing for a more urgent response, or quicker scheduling, or to find an answer for what is creating a health issue, not typically found in someone of a certain age with no other attributing factors. Don’t let the doctor tell you they have no idea. Make them figure it out, or at least point you in a different direction to help you find an answer. Typically, I encourage fellow survivors, a primary care doctor is likely going to be a good advocate for their patient, as they know the patient best. And when it comes scheduling, you try to schedule a nuclear stress test versus having the doctor make the call instead. See who gets scheduled sooner. I will give you a hint. The only reason I am alive today, is because my primary doctor of now nearly forty years, made that call, fifteen years ago, second week of April, that three days later, surgeons were saving my life performing emergency open heart surgery, because of late effects I had no knowledge I had. If I were to have made that call, at the young age of 42, that test would not have been scheduled at best, until three months later, or longer if I had to go through the appeal process, because that test made no sense for someone my age. But you get the idea.
“You need to advocate for your own care.”
The doctor went on to explain what he meant, exactly what we survivors have been doing for decades. We, the patients, have had to learn the potential side effects that can come up on our own, and then push doctors to take our word for it, get the tests ordered that will discover the issue, and get it fixed if possible. The reality of the possibility of walking into a doctor’s office, complaining of shortness of breath, as an adult in their forties, and have a doctor only do an EKG in his office, and then tell you “everything seems okay” except for the fact, you don’t feel okay, is all too common. You need to advocate for yourself, especially after reading this post, and the next one to follow (likely in a week or so – I am waiting for news on a particular web site), and use the information that is available to you, and find a doctor who will listen to you.
But why is a patient being put in this position? If there are so many of us survivors dealing with these issues, and clearly there are some doctors and facilities out there who can take care of us, why isn’t this type of care more common? The doctor offered his answer.
“Because we are going backwards in our healthcare.” Whether it is because of meddling insurance companies (or as I refer to them as greedy pen pushers) or medicine being privatized or incorporated, there is either just no interest or not enough profit to care beyond the “cure” for cancer. Things get too complicated with our conditions, and answers are just too costly with all of the tests that often need to be run on us survivors. Though I have not run a tally for all of my surgeries and emergency room visits, and the dozens of tests I have gone through over the years, I know if I just take the big things I have gone through, those alone would total well over a million dollars spent caring for my medicine induced health issues. I would not be surprised if I were in the three million dollar range at this point.
That’s right. And we end up right back where we started, with the doctor’s quote, “you have to advocate for your own care.”
I heard from several survivors after my last post and this Zoom, all saying the same thing, “is our survivorship all in vain? Is being treated successfully for cancer the only objective only to be left with these late side effects, that no one understands or can figure out? The rest is on the patient?” I do and I do not believe that. I do think this is where we are at in medicine these days. Gone are the times when doctors took their own initiatives, followed their guts, cared more about their patients than profits and what higher-ups expected of them.
I am long enough in the tooth to remember times, when doctors were allowed to care about their patients, and did. I have had my current primary care doctor nearly forty years. I have watched her take over my prior doctor’s practice, then take on a couple of practicing partners (including her husband). Then came the big take over by a hospital network, and little by little every year, this incorporation has taken over more and more of her practice. It is barely recognizable anymore if you just casually walked in for the first time. But when I get to see her, I can still see the same doctor who has given me the best care she can possibly give, regardless if her hands now appeared tied by corporate (she is not even allowed to have her kids and grandchild’s photos and school artwork hanging anymore – talk about a sterile looking office). All this time, she has been my greatest advocate. Sadly, a time will come, she is a few years older than me, and she will step away, and I will have to continue to fight this battle on my own.
There is no reason not to want to be cured of cancer. There is no reason not to want to move on and live life after hearing the words, “you are in remission.” But it is a totally different thing, to be aware of the fact, that what treated you, has the potential, not guaranteed, but potential, to cause problems later down the road of remission. You have two choices, and both are the right ones. Go ahead, push onward, forget that cancer was ever a part of your life. Avoid doctors because you feel great, and you do not want the negativity, or the reminders, of your past. Forget that you know, the risks are there. You know they are there because you are either reading this, or you know someone else who has dealt with these late effects. If you choose this path, and you end up being an “unlucky” one who faces something unexplainable for your demographic, all I ask, is remember what you know, what you have been told. We will be here to help support you, guide you, and advocate for you, should you end up having a late effect.
To be honest, this is exactly what happened with me. Upon learning my main artery to my heart, and valves were impacted by radiation eighteen years after my treatments, and my current cardiologist and surgeon really not schooled on this issue, I remembered fellow survivors who had gone before me, and I went running to them, for help in finding the care for these treatment related issues that I was now going to need, the rest of my life.
Or, your second choice, you will have regular follow-ups with your oncologist. The appointments will likely be every three months for the first couple of years, then every four months, every six months, and then annual. And you will reach that five year magical mark you have heard everyone talk about. And your oncologist will likely tell you, there is nothing really more to do. But you have read this post, and other posts, and instead of waiting to be told you have a major condition that has been building for years, and you are about to die, you learn about the treatments that you have gone through, research the potential (not guaranteed) side effects, and encourage your primary care doctor, “just to keep a look out for these things.” Living your survivorship this way, does not mean you are still carrying the specter of cancer on your shoulders. Not at all. If nothing shows up during these long term follow-ups, then those appointments give you peace of mind that all is well. But if something is discovered, it is found sooner than later, giving the best chance for corrective actions. Seriously, who do you think has it better? Me, who has a regular cardiologist, constantly watching all my numbers, and making decisions when things progress? Or somebody who does not see a doctor regular, but is walking up steps at a baseball game, and collapses from a heart attack that he had no idea his heart was in that bad a shape?
I get it. The stigma of continuing to be cared for as if doing so will actually manifest issues, is real. But in the end…
“You need to advocate for your own care.”
There will be a final part to this unintended series. And it will benefit all cancer survivors, not just Hodgkin’s Lymphoma survivors. I am waiting on a particular announcement, but the post is ready to publish as soon as I hear it, hopefully in a week or two.
A message from me… I actually wrote this post a couple of weeks ago. But events kept happening, making me feel it would be inappropriate to publish this post at that particular moment. As it turns out, the timing could not be any more relevant to understand the reality of a long term Hodgkin’s Lymphoma survivor. As this is being posted, my thoughts are with many survivors who are struggling with their survivorship as their bodies are forced to endure even more trauma. One survivor has spent more than 200 days between hospitals and long term care facilities recovering from his heart surgery. One survivor has spent more than two months in the ICU recovering from his heart surgery. Another survivor is heading into her third week recovering from her heart surgery, still hospitalized. And just yesterday, a fellow survivor was rushed to the hospital, in critical condition, a situation, just like the other three survivors, all created by the treatments for Hodgkin’s Lymphoma that we were exposed to decades ago. This post is about our reality. This post is about not being all Pollyannic with denials of “you don’t know that for sure,” or blanket “you’ll be fine if you just don’t think about it.”
I always say that if my words reach even just one person, then my efforts have been worth it. So, I hope you read this post, and come away with understanding, just how some of us long term survivors of Hodgkin’s Lymphoma, struggle with, and deal with, what we know, and many accept. We have to. Otherwise there is so much we would miss.
There is an expression, “saying the quiet part out loud,” used by Mr. Burns in an episode of the Simpsons (“A Star Is Burns”). This is a reference to revealing one’s thoughts currently in the head, that should be kept there, instead, spoken for anyone within ear shot to hear. You hear the phrase used quite often today, especially in politics, when a particular political party representative, in discussing policy, accidently reveals their true intentions, admitting either their knowledge or attitudes toward a particular agenda.
But in the world of long term cancer survivorship, “saying the quiet part out loud” has a different meaning. It is something that rarely if ever gets talked about, recognizing our increased mortality. I want to caution you, while the subject infers something quite uncomfortable, something normally kept quiet, unsaid, as a recent event showed me, it really is not all that bad. I want to stress, this has nothing do with manifesting anything to happen, or shouldering any bad juju.
I was participating in a Zoom session, with the guest speaker having been a fellow long term survivor, offering her perspective of survivorship. There are so many of us living decades after completing our treatments, and I know many of them over thirty of my thirty-three years of survivorship. We all have different experiences. In this case, the guest speaker said something, I can say I at least think of every now and then, though I do not recall ever hearing it out loud. As I heard it, I felt a powerful wave of relief come over me. For the first time, I knew someone felt as I did, that my feelings were normal. I had just never heard it before from someone else.
I am paraphrasing, “I know that my life expectancy is going to be less than I hoped, and I am okay with that.” The speaker was making reference to the fact, just as I an other long term survivors of Hodgkin’s Lymphoma, that she had developed late side effects from the treatments that gave her remission. The body can only handle so much trauma. She, others, and myself, have gone through similar and different experiences, many severe, many life threatening. And each issue, the risks of complications and mortality increase.
Anyone who has ever heard me talk about this, usually responds with the typical, “you don’t know that” or “you’re fine, you’re going to live a long life.” Exposing myself, I risk being ridiculed with, “don’t be a negative ‘Nelly'”. The worst comment you can make to me, “you’re living your life in fear, how awful.”
To be clear, I am not talking about dying, or actively dying. You have likely heard at some point in your life, “smoking cuts so many years off of your life,” or “too much cholesterol can result in less years,” etc. No one every really questions statements like that because of where that information and support comes from. But when you receive forty times the lifetime maximum exposure of radiation, or the most toxic of chemotherapy drugs (especially a drug that was used to kill thousands of people by Sadaam Hussein during the Iraq War), it only makes sense, that these treatments will have an impact on longevity.
In my 33 years of survival, I have met so many fellow survivors, some in person, and some through the digital world. Now I should preface the rest of this post. I honestly do not know many long term survivors of Hodgkin’s who are not dealing with late developing side effects. And there are two potential explanations. The first, people only reach out for help or answers, when something is wrong. If you do not know you have these issues, then you have no reason to look for others like myself. The second possibility, a survivor might actually be someone who has not developed any late side effects, or at least associated the unusual and unexplainable ailment they might be facing. And this is an important acknowledgement in my post. Here is why.
Twenty or so years ago, when I first came on to social media, the majority of my time spent on line, pertained to helping patients who had been going currently going through treatments for Hodgkin’s, not so much long term survivors. A reminder, I myself, did not know I had been developing late side effects yet at that time. Following the first crisis event of my survivorship, my emergency open heart surgery in 2008, I turned my attention to long term survivorship care and knowledge, while sharing time with current patients.
I had remained in communication with many patients who had “moved on” with their lives, against my advice, after hitting the “magic 5 year mark,” and saying good-bye to the cancer world forever. As years passed, it became more apparent to me, just how prominent these issues really were in survivorship. But for those who chose to move on, I kept my conflicted emotions to myself as those survivors shared their “new life” experiences, many exploring places that they, or I, had ever seen.
Then, I would see a post come through for a page, not from the survivor, but a family member. Someone had died. They were out doing one of their nature hikes, as they had done often before, and had a heart attack. In the example I am setting, which really happened, he was only in his 30’s, younger than me when I had my first heart surgery. But he was fit, active, and too young to die. There was never an answer as to what may have contributed to his passing, but those of us who have been in this survivor world, know the likely contribution, was the high and toxic doses of cancer treatments, unmonitored.
Another situation that increases our risks of long term survival, are spontaneous events, such as a car accident, or dare I say it, a pandemic. Those of us exposed to such toxicities, need to realize our bodies have been traumatized, leaving ourselves as able to fight and recover from any particular situation, even as simple as a stumble and fall, the way someone who had not been exposed to cancer treatments. One survivor I knew, had been in a car accident, suffered a head injury, with bleeding. She had actually recovered enough to be ordered released from the hospital, only to suffer something else that had occurred during the recovery, and died.
Then of course, there are the procedures after procedures that many of us endure. If we survive long enough after a particular correction (such as a heart valve replacement), to need it done again, the risks become even more complicated, making recovery more difficult. What would normally be a few days in the hospital recovering, could end up months between multiple facilities healing, hopefully. It is hard going through any surgery for a long term survivor once, let alone again, and again. And if we are dealing with doctors who are unfamiliar with our situations, the risks skyrocket.
Finally, there comes a time for many of my fellow survivors, their bodies just simply have enough. The trauma to the bodies over the years, just too much to handle anymore.
Many of my fellow survivors share a “memorial” page, where we have photos of those long term survivors who have come into our lives, and passed. Their passings could have been due to complications of procedures, spontaneous non-cancer related occurrences, or simply, their bodies just had enough. It is a beautiful page, with wonderful photos of a special time, showing how in spite of all that they were going through, they enjoyed every day that they could.
I know this post has been hard to read. But this is the life my fellow cancer survivors and I live. And with that, comes the acceptance part, that we know that we may not live as long as we once thought. We do what we can to take care of our issues that come up, and we hope for the best. We do not spend our days, waiting for the end. I have things that I still want to experience in life, mostly with my two young daughters. I do not put the pressure of long term goals on myself, but I go to bed each night, with the intention that I will have tomorrow, not worried that I might not see tomorrow, the cliche “one day at a time.”
It is the acceptance that I have found, that allows me to not live my life in fear. And that is why, it is actually hurtful, when I get told “you don’t know you will die sooner” or the denial “oh, you’re fine.” Though clearly I wish things were different, I am actually in a good place, comfortable with my fate, and what I have been able to experience in over 33 years, that had I not opted to go through the treatments, I definitely would not be writing these posts today. But that is why, it is oh so important, that you accept how I feel, not try to talk me out of. Do not feel sad or worried for me, because that is not my intention for writing this post. But I do want you there, for all that I still am able to experience in life.
Paul's Heart 